Hi i am just looking for anything on cardiac fibromas , my 14 year old daughter has had one since 1 year old when she went into sudden heart failure due too VT .
we have been given different opionons now for the last 13 years , we recently found out that her tumour is gradually growing and were told she would most probly need a heart transplant when she despratly needs it , we have nobody too talk too as this is so rare as we are always told by her cardiologist . I was told by a friend that this board may be a long shot but some gorlin sufferers have had cardiac fibromas ...
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kelly0751
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I guess you have heard too many expressions of sympathy and you didn't come here for those ... so I'll try to point the way to more help.
Warnings first. I have no medical expertise, (I'm the Group's treasurer) so can't advise you there. To the best of my knowledge the incidence of Cardiac Fibromas in Gorlin Syndrome is very low so the amount of information our members have is likely to be the same.
Having said that can I direct you to the Gorlin Syndrome Group's Webite at
Perhaps there will be someone there who has been in the same situation.
As facebook goes global, it is important to say what country you are in. (Systems differ so much).
Best wishes.
John Dooher
Hi
My sincere apologies for the lateness of my reply but I have been on annual leave and only recently returned.
Cardiac fibromas are a rarer aspect of Gorlin Syndrome. I am so sorry to hear of the news of your daughter.
The youngest of my three daughters passed away at 5 and a half months 34 years ago due to cardiac fibroma. Unfortunately little was known about the condition then and it was only after her death that my late husband and two surviving daughters were diagnosed with Gorlin Syndrome; my youngest a son is clear of the condition.
Is surgery an option for your daughter or is the cardiologist of the opinion that a transplant is her only option?
A good deal more is now known about the condition and regular surveillance and early treatment is vital for the removal of jaw cysts and Basal Cell Carcinomas to ensure effective management. With regards the heart I am unclear what procedures are but am happy to contact our medical advisers for further advice, if you feel this is appropriate.
Are you aware of the Gorlin Syndrome Group website, this can be accessed at gorlingroup.org and we have a Gorlin Syndrome Support Group on Facebook which can be accessed at facebook.com/groups/1272325...
If I can be of further assistance please do get in touch.
Thankyou for your reply , im so sorry too hear about your daughter i can not imagine anything like that, my daughter has never been diagnosed with gorlins just the fibroma.
It started a week before her first birthday she was ill with flu like symptoms, after a few weeks i knew something wasnt right and took her too a dr who said it was a big and she would be fine , 1 week later she was pale short of breath and sleepy so took her too hospital, again told it was a bug after tests etc , another week later she was really bad puffy eyes translucent skin etc took her bk too same dr who panicked and rushed her down too hospital, they finally realized it was her heart and quickly responded, we were told we were going too lose her but thankfully she fought hard and pulled through were were told she had vt and sent home after a week, 2 weeks later at a check up she was found too have a big mass and was rushed bk in for open heart surgery too take a biopsy , which is when we found out it was a fibroma and they could not remove it at that time , they said when she was older in her teens hopefully then, we were told after a m.r.i scan a few weeks ago its not possible and only a heart transplant was avaible when she needed it, i have never spoke too anyone with this illness but have recently been told from our cardiologist that there is a girl same age with exactly same condition just been refered too him.
Thank you for your kind words about my daughter. At least following her death my late husband and two surviving daughters got a diagnosis and since then we knew what we were dealing with and are in a position to access appropriate treatment.
You must worry about your daughter and her future but in the 34 years since my daughter died medical science and procedures have moved on. Hold onto the hope that that a transplant will be successful. Thinking of you and wishing you and your family well.
Margaret
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